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Looks like we are placing ANOTHER Warrior Jacob SHIRT ORDER!  WOW! I can’t believe the number of you who have contacted us needing more… just WOW!  So, if you, your team, employees, co-workers, friends want shirts let me know ASAP!  Shirts from the last order shipped last week so be on the lookout!  As for new, news… Jake will be admitted Wednesday for a few days. Part of MIBG therapy that he just finished means that the radiation will take his counts down similar to chemo but a bit differently – as in just as low, but with a longer recovery time. Because of this, he requires a “low dose, stem cell rescue”. Remember back in December when they harvested his stem cells, they hoped to get enough for a couple of treatments?  Well, they will use some of them for this, and a LOT when he finally gets to Bone Marrow Transplant. So we go in Wednesday to sedate him and place his PICC line. They’ll begin the procedure on Thursday and keep him for a couple of days. For those of you interested, ” A PICC line is a long, slender, flexible tube inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access.”  UGH!!  As if he hasn’t had enough procedures and lines placed in his little body lately!  The idea behind giving back his stem cells now, is that his marrow will deplete in about 2 weeks and it takes about 2 weeks for his own stem cells to graft and aid in his bone marrow recovery.  They call this a “rescue” and it should help him rebound faster and with less transfusions.  We already see plenty of those. Medical lesson over!  As awful as this all is, it really is fascinating sometimes. Who comes up with all of this?  Today we were in Clinic and it was full.  We were actually in isolation because Jake has “regulations” about being in the general public because of his radioactivity but I stepped out for a few minutes to get something to drink for him and say hello to a couple of people. As I walked through the infusion room, there were kids and poles everywhere with chemo, blood, platelets, meds, just doing their thing.  As I looked over and saw a mom I’ve never seen before, it made me think how “normal” this is for us now.  I don’t know her story and I didn’t get to talk to her but I’ve been thinking of her a lot today and wondering, praying for her.  While we were at Cook’s, Henry caught a family in the hall and road the elevator with them. They too, had that “deer caught in headlights” look. He just knew and started talking with them. They had just heard those words and everything was spinning for them. He talked to them for a while and learned of how they had gone from ER to immediate hospitalization because of what the Docs had found. I’ve been thinking of them a lot too.  We were them just 11 months ago… stunned, staggering in a cloudy haze of new terminology and unknowns. With Childhood Cancer Awareness Month here, it makes me think of all the new families this month that will hear, “it’s CANCER”.  I just want to take this time to THANK YOU!  IF you are reading this, YOU CARE!  If you are reading this, you are becoming AWARE.  If you are reading this, you have an OPPORTUNITY to make a DIFFERENCE.  Maybe you haven’t done a whole lot yet, maybe you have… either way, I HAVE FAITH, that you will. At some point, a situation will come before you, big or little, and you will be a VOICE for our kids.  My God bless at that very moment!  With that said, here is something small you can do.  Watch this. SHARE THIS!  Please pass it on!  Many of you have already seen this on my FB but we finally got it on Youtube so now you can share it with everyone!  And since it’s on Youtube, it can be e-mailed, FB shared, tweeted, pinned……. Awareness of these kids can bring change, and that will eventually bring a cure! [youtube=http://www.youtube.com/watch?v=A_XmnJQK01s&w=580]  Last week the East Montgomery County Chamber of Commerce held their meeting (many of them dressed in GOLD) and were able to view Jake’s Stand Up video. At the end they all stood AND THEN, they recorded a get well message for Jake. Take a look!  They are everyday people, who took time to do something special to raise funds and STAND UP for Childhood Cancer Kids.  I can’t even put into words the feelings that came over us watching this.  Talk about something amazing to come home to!  [youtube=http://www.youtube.com/watch?v=XnHsLtQ9EwA&w=580] The world is lighting GOLD more this year than ever before.  There is still time… it’s only the 9th… we can still GO GOLD!  Paint your nails, wear a gold ribbon, hang a bow on your mailbox, paint a ribbon on your car window, work window, put something on your FB, your work e-mails, wear your Jake shirt. Be creative and spark conversation… let the world know that KIDS GET CANCER TOO!

Here is part of our bald and BLESSED family… on Saturday, we attended the Dynamo Game where they were hosting the Bald Is Beautiful foundation and their annual Head Shave for Childhood Cancer event.  We knew that Cameron and Daddy were going to shave, but what came as a beautiful surprise, is that Emma and Kate joined in also.  I’m still in awe. It’s something that they will all remember forever and we are so, so proud.  The kids keep saying how soft their hair is and rubbing their heads – makes me smile everytime. These are the amazing moments of love and encouragement that restore the spirit and fill the heart to keep pushing through the hard moments of this journey.  And as for this journey… we met with our team at Cook’s on Monday.  When they took us back to the exam room, we opened the door and there were dino toys all over the exam table… they were READY!  Our Child Life ladies were ON IT!  A couple of things were for him to take home, and the others will be in his room when we arrive next week. What a way to relax Jake.  We can thank Saraben for being on top of things and communicating with the Cook’s team on the in’s and out’s of Jake.  We LOVE her so much!  We learned a lot… and we left with a “to do” list (ie EKG, ECHO, some medical role play to do with J).  We have to start mentally prepping Jake on all the tubes, chords, sitckies that will attach to him all week.  To give you an idea… he’ll have 2 IV’s, his port will be accessed, a blood pressure cuff, sticky heart monitors, finger pulse ox, and a foley catheter.  It’s a lot for anyone, but SO MUCH for a child, especially a child who already has “sticky issues”.  It sends him over the top to have the pulse ox and the chest monitors stuck to him.  It was definitely a trip full of information and we left with a major dilemma that must be solved this week.  Jake has an allergy to contrast.  Which type we aren’t completely sure since his CT and MIBG are always done back-to-back.  In October, he had a bad reaction during scans and the decision was made to always pre-medicate him and not take any chances. Because he’s medicated for both, we’ve never discovered the specific culprit. This treatment calls for 200 times the dose of a normal MIBG contrast scan. There is no way to ever “pre-medicate” to offset that kind of dosage. So we are left figuring out which it is.  If he doesn’t have a reaction to the MIBG iodine, we can assume it’s the CT contrast and we go forward. If there is a reaction we have to pull him. While this will give us answers, it subjects him to medications and possible side effects.  They really believe it will not be the iodine, that the CT is usually the issue, so we are banking on this. You can see in the pic what it did to him – this is his back. It was on his chest and forehead, as well. A dose the size of what they have to administer could cause anaphylactic shock. So we start this little “lab experiment” later today. This disease is just so monstrous. About the time you think you are gaining ground, your feet slip again.  But Jake is in GREAT spirits and feeling really well, and we are so THANKFUL and BLESSED for that. I sure wish we could fast forward 10 days and this was all done.  But I keep reminding myself that this is just a moment in time and we will look back on this in about 10 days with it all BEHIND us.  I ask for your continued prayers for Rod and Wendy Kardorff and their family as Sean’s funeral was today.  The Priest said that Sean loved the candles on the alter, he felt that one day, he’d be one of the alter boys and he pictures him doing just that in Heaven.  I thought that was beautiful.  Please pray that as all of their family and friends gather around them, they are comforted and find celebration in the wonderful life and love they shared. “The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever.” 2 Timothy 4:18

Tonight, I am sad.  No, actually, I’m MAD! I’m heartbroken and MAD!

Cancer… I’m SO mad you!  I’m mad that Jake has gone thru so much and still has so, so much more.  I’m mad because of what we are about to put him thru, that NO little boy should EVER go thru. On that point we will go round later.  MOSTLY……. I’m so very mad that you took another of our babies.  I’m so deliriously, tearfully mad!  I can’t stand myself, I can’t see the keyboard for all the tears, I’m so ANGRY!

This much I tell you… I speak for all of us cancer parents… this makes us fight harder. Stronger. We will rally.  We’ll stand arm and arm and when the dust settles and our strength returns, we will line up and we will FIGHT you harder than you know. You won’t see us coming, much like the thief in the night that you are. We will come together and we will be sure that our babies are not lost in vain. We will share their stories, we will rejoice in their short and precious lives, we will PRAY!

You break our hearts and instill fear, you bring despair and you steal the loves of our lives but what you don’t know, is that we are teaching our children about Love. We are teaching them about the One that is Light.  We are teaching them that you will not steal their spirit… that they will live on… painlessly, happy, and FREE!  We are teaching them that when they leave our arms, they will run straight to JESUS.  And that cancer……..you WILL NEVER TAKE!

Rest in love and perfect peace, sweet Sean.

This song has been speaking to me all day. It’s beautiful and fitting.  Sing of Your Glory Now by Bebo Norman  http://www.youtube.com/watch?v=z3wa89TU3WU